Thursday, 8 April 2010

Speech and Language Therapy - long wait

Ok so there have been quite a few up and down days lately, mostly down, but now the sun is back out and so I'm starting to feel positive again. Or at least I would be, if I hadn't just received the letter from our local Speech & Therapy NHS dept which states that they are understaffed and so the wait is going to be longer than they originally told us - 6 months, which is about now from the time of Sasha's initial assessment. Wouldn't seem quite so bad if they could have actually told us when the therapy might begin, but they can't even say that at the moment apparently. So now begins the search for a private Speech & Language Therapist - but where to begin? How do we know who is going to be good with Sasha, who has the right kind of experience - and can anyone make her sit still for long enough and listen anyhow?!

I've also had the DLA (disabililty living allowance) forms through this week, which is a claim we will need to make in order to be able to pay for the speech therapy. Hopefully someone from the money advice unit is going to come round (in about 4 weeks time if we're lucky) to help me fill these in, as I've been warned that it is a tear-jerking kind of experience which I'll need a box of tissues for - we literally need to paint Sasha in the worst light, put onto paper all of the difficult things, to give someone else an insight into what she is like. Very difficult to write down I would say. Something I'm sure I'll mention is the fact that after waking up this morning, she managed to rip half of the (newly fitted) blackout blind off the top of the roll - not intentionally destructive I'm sure, she just likes to experiment with everything! A lot of my time is spent tidying up after her (but then again, I was probably doing it for Tamsin at this age still too!).

Was slightly concerned after Sasha came in from nursery yesterday, as she came to me several times and shouted at me to 'stop it' - a new phrase she has obviously picked up, and is now using when she wants my attention. She was also grabbing my face and spouting something else 'repeated' at me, not sure what but it will probably come to light. I'm sure they're very good with her at nursery, and they have let the staff know the diagnosis, so I can't imagine that's how they are treating her - maybe it's something she's picked up from another child? Time will tell.

Had a day out at Willows, the local farm/play centre this week, and it was a challenge. Sasha has no concept of queueing, although she did manage really well on the way in (why is it I always manage to pick the slowest moving queue though?!). She was desperate to go on the giant bouncy slide, but as there was a queue of around 15 children for it at all times I had to drag her away - she did a sterling job of trying to push in at the front but I'm just not the sort of mum who would let her and it's a bit difficult trying to explain to everyone why she can't wait like the others! However there was no queue for the bouncy castle and it was all worth it to see her smile when she was on there - she even managed to make a fleeting friend! Also was good to see Tamsin on the bigger bouncy castle, holding her own and enjoying herself amongst lots of bigger kids - it's not that long ago she would have been too scared of that.

So off to enjoy the sun in the garden now - having a well-earned 'lazy' day at home!

PDA is a type of Autism Spectrum Disorder which is best approached using 'non-typical' parenting strategies (read more about PDA its...

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What is Autism?

'Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction'.What is PDA (Pathological Demand Avoidance)?

Pathological Demand Avoidance (PDA) is one of several Autistic Spectrum Conditions (also known as ASD, Autistic Spectrum Disorder). The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control.

Children may sometimes be described as having 'challenging' or 'oppositional' behaviour. Parents describe life as 'walking on eggshells' and their child as 'Jekyll and Hyde'.